My story

my story

The main page said to post stories, so here goes. I was diagnosed with Crohn's colitis just over six months ago. I had been having symptoms for six months before that. Let me give you the back story.

In January, 2007, I went to a family practice physician for a throat infection. It felt like I had strep or something like that. She tested me for strep, and that came back negative. She gave me prescriptions for my throat infection and said if it didn't get better, to come back. I went back four days later. She tried another prescription and said the same thing. I couldn't get in to see her, but I got in to see my normal physician. He drew blood, but only tested for mono. That came back negative. So now in February, I had gone back to him three times, and saw the first physician again twice. I was finally referred to an ear, nose, throat specialist and someone else for the erethema nodosum in my legs. (Did I mention that I couldn't walk really well either because I had that?) I was on at least 15 different doses of prednisone throughout the six months. Finally, I couldn't take it any more and I went to the hospital in June. The physician that was on call told me to take pepcid AC for my stomach pain and continue on the throat lozenges and cough suppresants. He also suggested that I take 800 Mg of asprin to help with the erythema nodosum.

I was at work one night, about to leave (I work nights) and I felt sick to my stomach. I went into the bathroom to throw up and I ended up going to the bathroom. It was blood.

So to make a gross story ungross. I had my fiance come and get me and take me to the hospital. The doctor knew right away what it was, so he started me on an asacol drip and gave me potassium. I was told that my symptoms were backwards and that it was no surprise that I had been wrongly diagnosed for six months. I had a colonoscopy and was out of the hospital in three days.

I feel like one of the lucky ones. I know that I could have been worse off, but I also know that it wasn't a situation that anyone wishes for either. My current GI doctor is awesome and he talked about taking my dosage of Asacol down a bit in the spring.

I have been able to do all the things that I need to do, include planning my wedding. When I was sick, we put it off and now we have been engaged longer than we were dating. We are going on vacation this summer and getting married next.

This forum is such a great outlet for any questions or concerns. I have been trying to find this sort of thing for six months. I can't make the support groups in my area because I work nights. Hopefully one of these days, I can do so.

Thanks for listening and if anyone has any suggestions, I am open for them.

Hello and welcome to the forum.

It is good they diagnosed you in the end. It is hard to treat an unknown disease.

The only advice I have is eat healthy, avoid stress, and stay on top of this disease.

I wish you well in your upcoming marriage.

Congratulations!

Dan

Welcome. Good to hear you finally got your diagnosis. It has been known to take longer for others.

I agree with the previous post as far as advice goes. I also might suggest that you and your fiance set up a savings account for any possible unexpected medical bills down the road.

Cuddles

What is erethema nodosum? What does it look like? Sorry to be nosy!

erythema nodosum

Erythema nodosum is a swelling of the fatty layer of skin anywhere from the toes up to the knee. It affects walking, standing and even causes restlessness in your legs. It hurt so much and was swollen so much that I could barely even wear my sneakers, which were walking shoes. There are photos of it on the internet if you are really interested, but let me warn you that they can get rather gross.

I had red blotches all up and down my shins. my legs were black and blue and I felt like sh**.

Hi, TMCUDDLES, welcome to the forum. Glad you found us... spread the word when (if) you make a local support meeting. I've found this site an uplifting event in an otherwise dreary post dx period. it really has helped me get through this.

After you've become familiar, comfortable with this site and it's local inhabitants, if you want to (it's a personal thingy, after all this is the 'net') then tell us a little about yourself... It's common for people who come here 1st time to concentrate on their 'disease'.. I for one, feel we are so much more than that

Some folks pick a nom de plume, but tag their real names in too (to each their own)... But its a little easier/quicker to get to know a 'regular' (if you hangout here) if/when you feel comfortable sharing some broad facts... like country, or gender, or rough age category... (frinstance, you got to be of age to get into the Lounge).. Elsewise, people just associate 'you' with your symptoms, you know what I mean? Anyway, welcome again, congrats on the dx N engagement

Kev, you are right. I am not a disease, I just have the symptoms of one.

My name is Michele. I am 24 years old and live in New York state, United States. I am a copy editor/page designer at a newspaper. My fiance and I met at college and like I said originally, we are getting married next year (Thank you on the congrats by the way.) I have two older brothers, both of which keep forgetting that I can't eat Thai food.

I don't really know what else people want to know, so just feel free to ask.

I know a few things I can't eat at all, like ice cream. My doctor told me to try and see what it does. That really sucks because dippin' dots are the best thing in the world. I can have sherbet and frozen yogurt though. I guess that's not too bad. I found that I can have some soda and minimal caffeine (My fiance, Ted, and I agreed on Caffeine lite in the coffee pot.)

I am a huge hockey fan, preferably the Buffalo Sabres, but I can stand some other teams. I used to play Softball. I was in the band and chorus in high school and still love to sing. I love music and not just one genre, I like a lot of music. In my CD player's (plural for a reason - I think there is one in practically every room) right now are Michael Buble and Carrie Underwood.

I hope that helps to decipher who I am and what I like. Any other questions?

No Michele (or would you prefer TMCuddles?) You've pretty much covered the bases. OK. I will ask one more question, just cause I'm a nosey old fart. Anyone else in the family tree afflicted, or showing signs of the disease? Has the genetic factor raised it's ugly head? Oh, regarding eats, if you don't already, you may opt to keep a food diary. Lots of us on here have found that it helps pinpoint triggers

genetics

My mom has diverticulosis. My cousin had gall stones and most of the rest of my family has IBS (my godmother/great aunt included). I don't know as anyone else has been diagnosed with crohn's because my family doesn't really talk all that often, but it seems to be my mom's side anyways.

I don't know if this is true, but I have heard that it's mostly of European/Mediteranean descent. I happen to be mostly Italian on my mom's side.

Can someone refute that?

Can't refute it, can't really substantiate it either. Heard that theres definitely some genetic factor, but the numbers are varied.. anywhere from 10 - 20 "%" increased risk to a journalist who claimed a 10 times increased risk (but she didn't give the source of that statistic, and it seems inordinately out of proportion to the other). There is an ethnic factor to the disease, and european ancestry is reported to play a part (how big, what the percentage is, I dunno). I saw a post on here recently, a link to a CCFA thread, that stated the number (ratio) of cases of IBD in Canada had increased from 1:300 a generation ago to 1:200.. That's an alarming, actually staggering increase. I don't know if it is at all tied to the current numbers in the US. I wonder if there are any current nos on it for the US, or if those are pending. In any case, I find it amazing that this incredible increase could have happened in Canada, and why no public alarm bells are sounding in the wake of those numbers. I can't see this disease not traversing the border... I mean, other than financial aspects, medicine here is not all that different than south of the 49th'. I dont' see travel restrictions as a means of it not increasing there. folks with IBD can still get passports